Fistula? Could it be? Women's issue?

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Regular Member

Date Joined Aug 2006
Total Posts : 186
   Posted 1/21/2009 10:26 AM (GMT -7)   
So it should be fitting that I come back to this forum to talk about one of the more disgusting issues of our disease. I have Severe CD in both large and small intestines, Celiac's Disease, gastroparesis, and IBS. In September, surprise of all surprises, I found out I was pregnant and was taken off all my meds (including my 8.5 mg/kg Remicade every 4 weeks). We lost the baby at 10 weeks, and I didn't get back on my Remicade until early December when my grandfather (whom I was extremely close to) passed away. We bought a new home in November, and a new car in December. I was pretty sure that if a Flare-up were to find  me, it would be now.
So in the last 4 weeks my joints have gotten worse, hair has fallen out, fevers, D is about 7-8 times a day when I eat, and Sunday night I started vomiting...EVERYTHING. My GI ran a Sed Rate, CBC, and Basic Metabolic Comp. Panel on Monday and I was so dehydrated that I got stuck 3 times and finally they had to draw the blood with a syringe as it just wasn't coming out. I saw the Rhem this morning who stated my joints look- visually, fine. So he's wondering if either the Remicade isn't working anymore, or if I need to go through the Loading Dosage again.
But I noticed several days ago that there was a distinct discharge from my vagina and a lot of pain around the opening of urination (what is that- the ureathreal opening?-all those years of Pre-Med...down the drain). I can't find any type of opening, but I do feel a rather large area of (pus? tissue?) something that hurts very badly inside the inner labia. Does that make any sense to anyone? I've never had a complication like this before, and  am only somewhat aware of what a vaginal fistula is, and this doesn't seem to be in that area.
Any advice you could give would be wonderful! My GI's nurse seems very worried. She called me to say I needed to be seen right away (before I told her I suspected maybe a fistula) and that the labs came back but the Dr wants to talk to me about them. I can only assume that means they aren't normal- which is fine, since that explains the symptons (I've always had normal labs- even when my colon was full of ulcers).

Forum Moderator

Date Joined Nov 2003
Total Posts : 7122
   Posted 1/21/2009 1:14 PM (GMT -7)   

You might consider a problem with an infected Bartholin gland.


"The Bartholin's gland is a tiny organ on each of the labia (vaginal lips), near the opening of the vagina. If the vagina were the face of a clock, these glands would be found at about 4 and 8 o'clock. Normally they are invisible. They make a small amount of fluid that lubricates the vaginal lips. If a flap of skin grows over the opening of one of the glands, the fluid backs up. It causes a round swelling called a cyst.."

Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 1/21/2009 6:50 PM (GMT -7)   
I agree with Ides. An infected Bartholins gland is fairly common. It forms an abscess that needs to be drained (yes yet another thing that needs to be drained!!) Go see your gynecologist for this. I learned the hard way that docotrs have clear areas of authority, and this is the turf of gynecologists. I would not delay!

Let us know how it goes!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.

Mormor Vicky
Veteran Member

Date Joined Mar 2007
Total Posts : 684
   Posted 1/21/2009 6:58 PM (GMT -7)   
My daughter had an abcess from a fistula in the exact same place when she was just 14. They had to drain and pack it. Could very well be a fistula.
Vicky / 49 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
Daughter (28) also has Crohn's since she was 12.
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor, Lisinopril

Regular Member

Date Joined Aug 2006
Total Posts : 186
   Posted 1/22/2009 7:23 AM (GMT -7)   
Apparently my labs are very high. So if I have what  my Rheumy likes to call 'Hot Crohn's' (I've personally never found it very attractive!), then I'm really thinking fistula. It just really is frustrating because there's not much out there on the web about this. This isn't exactly in the vaginal region, so there's not much to go off of. Also, it's not like you can just take a little lookie-loo yourself.
I called my mother last night and cried, just wishing there was someone I could talk to about it. It's an embarrassing enough disease. I'm almost 26 years old and suddenly feel like a 13 year old girl and no one understands me! :)

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 1/22/2009 7:48 AM (GMT -7)   
Hello Mandolen.

Were you able to see your GI doctor about this?? I hope you find an answer soon so you can get it taken care of!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.

Julia Hill
Veteran Member

Date Joined Mar 2008
Total Posts : 560
   Posted 1/22/2009 8:41 AM (GMT -7)   

What a horrible thing you are going through. Please get an MRI of the pelvis area. If it is a fistula complete with abscess it should show up. I have been having problems with a rectal vaginal fistula c/w abscess and all showed up on MRI except 10% was blind. The 10% is where the abscess is and we are still trying to find it. My gyno wants me in his office when it is draining so he can see what wall it is coming from. Otherwise almost impossible to find. My colorectal surgeon even did exploratory surgery - like finding a needle in a haystack. I wish us both luck in finding our problem.

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